I finished induction therapy on the 17th February, of VCD (Velcade-cyclophosphamide-dexamethasone, aka CyBorD) plus monthly Zometa. I developed some neuropathy in my left foot. Side is partly numb but no big problem.
The last couple of weeks have had calf pain which I put down to a soft tissue injury and my leg had slight swelling in calf and ankle. Visited my local G.P. who contacted my oncologist. Had ultrasound of my leg which revealed two DVTs, one in calf and one in the thigh area. The thigh one is 20cm long. Oncologist started me immediately on blood thinning medication Xarelto.
Has anyone else had DVT from chemotherapy? Seems more concerning to me that my multiple myeloma at present.
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Darbs - Name: Darbs
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 26.09.13
- Age at diagnosis: 60
Re: Deep vein thrombosis from chemotherapy
I was diagnosed in Dec 2007. They tried Velcade last year with me. After 4 treatments had to stop; it made me to sick. The only other drugs I have been on is dexamethasone and Revlimid (which is a chemo drug). The Revlimid caused a blood clot in my left inner thigh, which landed me in the hospital.
I was put on Coumadin at first, but I didn't like all the blood work and shots in the stomach, so they switched me to Xarelto. I have been doing good on that, but get ready to loose your hair, after a month on Xarelto I started losing my hair by the handfuls. So I just shaved my head recently, I couldn't take it any more.
I talked to the doctor about it the other day and just about all the blood thinners out there he said cause hair loss. This is not mentioned in the side effects but after searching the internet I found other people losing their hair too and a number to call to let them know about it.
Hope this helps a bit. Nancy
I was put on Coumadin at first, but I didn't like all the blood work and shots in the stomach, so they switched me to Xarelto. I have been doing good on that, but get ready to loose your hair, after a month on Xarelto I started losing my hair by the handfuls. So I just shaved my head recently, I couldn't take it any more.
I talked to the doctor about it the other day and just about all the blood thinners out there he said cause hair loss. This is not mentioned in the side effects but after searching the internet I found other people losing their hair too and a number to call to let them know about it.
Hope this helps a bit. Nancy
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Deep vein thrombosis from chemotherapy
Thanks Nancy,
I think I have hair loss coming up soon with my SCT I keep it short anyway so not worried about that, well it's seems a few things might cause DVT,apparently myeloma itself can do it something else to worry about.
Thanks
Eric
I think I have hair loss coming up soon with my SCT I keep it short anyway so not worried about that, well it's seems a few things might cause DVT,apparently myeloma itself can do it something else to worry about.
Thanks
Eric
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Darbs - Name: Darbs
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 26.09.13
- Age at diagnosis: 60
Re: Deep vein thrombosis from chemotherapy
Venous thrombosis is unfortunately very common in myeloma patients. About 10% chance of developing at some point during treatment. The CyBorD regimen does not significantly increase the risk of thrombosis. Immunomodulating drugs like Revlimid do increase risk of thrombosis considerably.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Deep vein thrombosis from chemotherapy
Hubby was diagnosed just today with deep vein thrombosis (DVT). He had a pain in left calf Friday, leg swelled up, and it was found in his lower inner thigh. He has been put by the emergency doc on dalteparin (Fragmin) for a minimum of 1 month.
Hubby was diagnosed in March and is just starting his 6th cycle of cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD). His doctor wants him to finish 9 cycles, 5 weeks each. He did get stringent complete response (sCR) after the first cycle, and we are wondering if he could go on a reduced dose now as he sleeps most days and now has DVT. His doctor says he wants him to finish all 9 cycles, but there has to be some quality of life for a 73 year old.
Any thoughts? Our doctor says we won't have such a deep response if he decreases the dose. We want to keep going, but not full bore.
Thanks.
Hubby was diagnosed in March and is just starting his 6th cycle of cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD). His doctor wants him to finish 9 cycles, 5 weeks each. He did get stringent complete response (sCR) after the first cycle, and we are wondering if he could go on a reduced dose now as he sleeps most days and now has DVT. His doctor says he wants him to finish all 9 cycles, but there has to be some quality of life for a 73 year old.
Any thoughts? Our doctor says we won't have such a deep response if he decreases the dose. We want to keep going, but not full bore.
Thanks.
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lyynda - Name: Lynda
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 72
Re: Deep vein thrombosis from chemotherapy
Hello, Lyynda:
Just let me briefly relay the protocol that my wife was on for Kyprolis, Revlimid, and dexamethasone consolidation. When complete response (CR) was reached, the round was completed, and a bone marrow biopsy was conducted. If minimal residual disease (MRD) negative status was reached, the consolidation is stopped, and then they go to a maintenance phase. If the patient is MRD positive, then possibly a couple of more rounds would be in order. I am not sure as to your dosage level, but it seems to me that continuing with full dosage after achieving a stringent complete response (sCR) is a way conservative approach (on the side of over-treating) that not all doctors would necessarily follow. Keep in mind that MRD is the most sensitive that we can detect today, but does not mean that its all entirely gone, but it is a good status with a good prognosis.
Just let me briefly relay the protocol that my wife was on for Kyprolis, Revlimid, and dexamethasone consolidation. When complete response (CR) was reached, the round was completed, and a bone marrow biopsy was conducted. If minimal residual disease (MRD) negative status was reached, the consolidation is stopped, and then they go to a maintenance phase. If the patient is MRD positive, then possibly a couple of more rounds would be in order. I am not sure as to your dosage level, but it seems to me that continuing with full dosage after achieving a stringent complete response (sCR) is a way conservative approach (on the side of over-treating) that not all doctors would necessarily follow. Keep in mind that MRD is the most sensitive that we can detect today, but does not mean that its all entirely gone, but it is a good status with a good prognosis.
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JPC - Name: JPC
Re: Deep vein thrombosis from chemotherapy
Sorry to hear about your husband's DVT, Lynda.
I think your husband's doctor may be recommending continuation of treatment at the standard dose for a couple reasons.
One reason may be that there is research indicating that myeloma patients who have a rapid deep response to treatment may actually have more aggressive disease. I'm afraid I don't have "the" reference for this notion, but you can see the basis for it, for example, in this paper,
van Rhee, F., et al, "High serum-free light chain levels and their rapid reduction in response to therapy define an aggressive multiple myeloma subtype with poor prognosis", Blood, 2007 (full text of article)
It's also suggested by the results discussed in this article:
"Researchers Take A Closer Look At Extended Revlimid-Dexamethasone Therapy For Newly Diagnosed Myeloma", The Myeloma Beacon, Jan 15, 2014
None of these results mean that your husband's disease actually is aggressive. It's just a possibility, so his doctor may be recommending continuation of treatment at the standard dose just to err on the side of caution.
Another reason is that there is only limited evidence that using depth of response to guide treatment leads to better survival outcomes. So using response results -- whether it be CR, sCR, or MRD status -- to guide treatment could very well lead to overtreatment in many cases, but also undertreatment in cases such as your husband's.
There is a whole separate thread here in the forum about treating for depth of response if you're interested in that subject.
"Does a deeper response mean longer overall survival?" (started Sep 14, 2016)
Good luck!
I think your husband's doctor may be recommending continuation of treatment at the standard dose for a couple reasons.
One reason may be that there is research indicating that myeloma patients who have a rapid deep response to treatment may actually have more aggressive disease. I'm afraid I don't have "the" reference for this notion, but you can see the basis for it, for example, in this paper,
van Rhee, F., et al, "High serum-free light chain levels and their rapid reduction in response to therapy define an aggressive multiple myeloma subtype with poor prognosis", Blood, 2007 (full text of article)
It's also suggested by the results discussed in this article:
"Researchers Take A Closer Look At Extended Revlimid-Dexamethasone Therapy For Newly Diagnosed Myeloma", The Myeloma Beacon, Jan 15, 2014
None of these results mean that your husband's disease actually is aggressive. It's just a possibility, so his doctor may be recommending continuation of treatment at the standard dose just to err on the side of caution.
Another reason is that there is only limited evidence that using depth of response to guide treatment leads to better survival outcomes. So using response results -- whether it be CR, sCR, or MRD status -- to guide treatment could very well lead to overtreatment in many cases, but also undertreatment in cases such as your husband's.
There is a whole separate thread here in the forum about treating for depth of response if you're interested in that subject.
"Does a deeper response mean longer overall survival?" (started Sep 14, 2016)
Good luck!
Re: Deep vein thrombosis from chemotherapy
Hello Lynda:
I think what Terry said is accurate in all respects, but I would like to add one or two points to what she said. One of the things I am not understanding about what you report is the 9 rounds of CyBorD. From my research, the standard approach to treatment is four or five rounds, and then possibly going onto an ASCT. For transplant ineligible patients, who are older, or not in good enough health for an ASCT, there is a lower dosing level that they use, sometimes called a continuous therapy dosing level. So I am wondering if they explained to you and your husband whether or not he is ASCT eligible (possibly not based on the age, though some do have it in the early 70's, if fit), and whether or not he is on a continuous therapy, already at a lower dose.
So I do think its important that you ask the doctor and have the "plan" explained to you. What does your doctor say about how many rounds? Did you evaluate minimum residual disease. I mentioned in my earlier thread that some doctors are of the opinion that reaching MRD - is a "hurdle" indicating that the line of treatment could be cut off, and to move on to the next phase (ASCT or maintenance, etc.). Is ASCT in the cards? When will you move on to maintenance? What is the doctors philosophy of handling side effects? (I think DVT is potentially much more than a nuisance). And that all raises the question, is your doctor a multiple myeloma specialist that does multiple myeloma full time or near full time? I think your original question was very fair. I understand that your doctor did get your husband to CR, so that is clearly good, but you should ask (really insist upon) getting a thorough explanation as to approach. At the very beginning, of course, the doctor has no other choice but to say "that depends" on how the treatment goes, however, you have reached CR, and I think some expectations on approach should be made clear.
I think what Terry said is accurate in all respects, but I would like to add one or two points to what she said. One of the things I am not understanding about what you report is the 9 rounds of CyBorD. From my research, the standard approach to treatment is four or five rounds, and then possibly going onto an ASCT. For transplant ineligible patients, who are older, or not in good enough health for an ASCT, there is a lower dosing level that they use, sometimes called a continuous therapy dosing level. So I am wondering if they explained to you and your husband whether or not he is ASCT eligible (possibly not based on the age, though some do have it in the early 70's, if fit), and whether or not he is on a continuous therapy, already at a lower dose.
So I do think its important that you ask the doctor and have the "plan" explained to you. What does your doctor say about how many rounds? Did you evaluate minimum residual disease. I mentioned in my earlier thread that some doctors are of the opinion that reaching MRD - is a "hurdle" indicating that the line of treatment could be cut off, and to move on to the next phase (ASCT or maintenance, etc.). Is ASCT in the cards? When will you move on to maintenance? What is the doctors philosophy of handling side effects? (I think DVT is potentially much more than a nuisance). And that all raises the question, is your doctor a multiple myeloma specialist that does multiple myeloma full time or near full time? I think your original question was very fair. I understand that your doctor did get your husband to CR, so that is clearly good, but you should ask (really insist upon) getting a thorough explanation as to approach. At the very beginning, of course, the doctor has no other choice but to say "that depends" on how the treatment goes, however, you have reached CR, and I think some expectations on approach should be made clear.
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JPC - Name: JPC
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